Being the parent of a medically complex and fragile child. And all too often absent parent of her brother.
The hardest job was my honor, the hardest job inspires AudreySpirit.
All Audrey wanted to do was strategize about Labor Day Sales, hang out with friends and start her freshman year of high school. Her older brother, Peter, was also beginning his freshman year away at college. I so wanted to help her get ready for her new school experience and help Peter love college life. I was so tired, I didn’t even feel tired anymore. Tired was just my state of being. Family caregivers, including sibling caregivers like me and Peter don’t want to complain because we are grateful for our health and for the opportunity to take the best care possible of our loved one. We appropriately focus on the significant needs of our child/sister. Maintaining Audrey’s sense of self worth, which in our society is tied to appearance, productivity and social interaction, and helping her to have the best quality of life until a cure came was our mission. We just needed ONE more miracle.
The summer of 2010 was a particularly difficult one. Most of the summer was spent in the hospital. On the days we didn’t stay in the hospital, every morning, including Saturdays and Sundays, I drove 14 year old Audrey to Children’s Mercy Hospital for an antibiotic infusion that required medical monitoring (cardiac leads, those stickers that watch heart activity), and vital signs (blood pressure, temperature, oxygen saturation etc). She also had unstable magnesium and potassium levels requiring nearly daily bloodwork and sometimes would need to add those infusions to her daily routine. Then after being designated stable and able to leave the hospital, I’d run her to her grandmother’s (Bamo’s) and head to work. It was a treat to actually go to work. Sometimes after getting settled, I’d get a call that there was more drama from lab tests that took longer to “report” and we’d have to turn around and go right back. We were blessed to only have a 30 mile commute one way.
We had another hospital stay for about 3 ½ weeks for a “new problem” – you know that diagnosis that changes everything, again? That was just our “normal.” Okay, so we figure that out, then go home August 30, 2010.
Audrey was having high, really high, blood pressure for several months and was taking medication to help control it. When her blood pressure was high, she would get bad headaches. She also had migraine headaches and juvenile diabetes from which high blood sugars gave her headaches. Trying to figure out which caused what and how to treat it was part of our daily triage routine. By daily, I do not mean by day, I mean every day, morning, night and throughout the night we tackled one problem after another after another.
We called our moment to moment at-home diagnosis and symptom management strategies “doing the circuit,” like when an athlete at a gym works on this machine for so many repetitions (reps) then moves to another type and set of reps and on and on for a sensible workout. We tried this, then that, then something else to see if making the blood pressure better helped, checking on the blood sugar, re-positioning the head — try the recliner, try the bed, try cold washcloths..Audrey kept telling me “I have to go back.”
Paid nurses would not perform this job without physician/advanced practiced nurse orders, protocols, procedures, up to date continuing education required for licensure, liability insurance, and shift relief. For licensed nurses, someone orders the medication and supplies and delivers them, ready to use. Family members, the unlicensed caregivers, do those things without similar training or shift relief plus the work of care assistants, cooks, medical care coordinators, inventory management for pharmaceuticals and supplies, super creative financial management, insurance policy selection and benefit and claims expertise, design and manufacture adaptive/assistive technology, oversee occupational and physical therapy treatment compliance and we know more than we hoped to about Publication 502 of the Internal Revenue Service’s Tax Code. We learn how to rent a Federal Aviation Administration (FAA) approved oxygen concentrator for airplane travel and how to get documentation from a medical provider to cause less embarrassment while maneuvering through Transportation Security Administration (TSA) to board a plane and how to arrange to have home health equipment (transport chairs, oxygen, tubing etc) arrive at our destination’s hotel just in time to be needed.
We translate between inpatient and outpatient provider teams and negotiate our child’s terms of compliance with treatments, tests and procedures within the context of the personal interests and needs as a developing human being who wants so badly to be just another kid at school. We motivate and support our child to do scary, painful and traumatic things that may or may not produce a diagnosis or verify a treatment plan’s success. Family caregivers advocate for education and participation accommodations. We help with homework, shop for science presentations and sometimes give a little attention to siblings/ourselves.
I’ve cared for a spouse with cancer who nearly died from complications of chemotherapy, radiation and a blood stream infection and whose health is challenged today from the same treatment given to survive the cancer. I’ve been in the intensive care unit (ICU) room when my father was removed from life support and stood by my mother’s ICU bed while she passed away. In all actuality, surviving Audrey’s death took less adjustment than surviving the need to be a 24/7 caregiver of a child. The decline and illness of self-actualized adults was completely different than that of a developing child for whom my signature was responsible. I didn’t get do overs.
September 1, 2010 was the beginning of Audrey’s biggest, longest, bravest and ultimately fatal fight. These photos are from Audrey’s discarded notebook that I repurposed to keep track of, as I always did for any healthcare interaction, Audrey’s final admission.
The purpose of sharing my experience is so other family caregivers, including sibling caregivers and those who interact with them realize the value of their labor and begin to systematically identify and support their needs.